Reactions of other less informed c-pap users.

Almost everybody I've discussed it with has been interested in comparing notes.

That said, I'm a self-confessed "geek" (positive West coast meaning: "nerd with a good social life") and the folks that I hang out with are mostly geeky techies.

Most see the CPAP treatment as another aspect of their lives to be "tweaked and optimized." Plus there are cool new computerized CPAP-machine toys...

I talk about the data from the S9 disk and you can almost see their hacker fingers twitching.

Sleepy Tiger

I belong to a gaming group and I tend to be an open book. Drives my wife crazy. lol So any way I announced i was going for the testing and there were 3 people in the group that piped up they had it and one directed me to these forums. They al were very interested to see how I was making out. And what gear i ended up. I think the gaming folks have a tendency to be more tech oriented so i think my experience with them is that they like to be informed. I know I do. I do a lot of research on my growing list of ailments. Trying to to learn the most I can about what I am up against. I can understand where some folks just use it and dont get involved. I tend to be non confrontational but prefer to be informed because I will pipe up if I feel I am not getting treated properly or I have concerns. So I would have to say for the most part with the small group of folks i know that use it they have been pretty open about it. I would say 50 / 50 on their knowledge over all. Those that really researched versus those more passive.

Ran into a good one today!

A local church here has a rather impressive pipe organ (for nearly a decade, the largest in Nevada, now there are two bigger ones in Las Vegas), and as part of the program that got them this organ, they feature a concert every Friday at noon. A wide variety of organists have performed here from the US and Europe. And as an organ music nut, I try and make it every Friday i can.

Today's performer was an organist with a big, heavy build, like many I know with sleep apnea. He had an excellent program with a variety of not-so-commonly performed music. He also made a lot of mistakes, more than most performers.

After the concert, me and a friend were talking with him. He mentioned that he was tired. He had flown to Reno, but did not take his CPAP machine. Before i could say anything, my friend pointed out that I, too am a 'hoser'. He mentioned that he didn't bring his machine because of the extra hassles it causes him when he flies. (well, he definitely could have used it last night!) I asked him what kind of machine he had, and he told me 'Its a (Name of a DME)'. He obviously did not know or care a whole lot about his therapy, even if he was more or less compliant (which I have to guess he usually is. I can't aimagine what I would feel like now if I missed a night).

Hello all,

I've really appreciated this forum - it's much "richer" in information than the manufacturers' sites and my medical providers.

I think the reason most apneans (love that) don't want to talk about it is denial/shame. It's a drag to learn you snore, have to strap some alien appliance to your face and hook up to a machine. I REALLY didn't want to hear it at first. Initially I think I only caught a small percentage of the information provided because I was still in shock at the prospect of the solution!

Now that I am beginning to enjoy the benefits of the treatment, I "get" it and am anxious to get well as fast as I can. After years of confused medical services being provided, I am pretty jaded and want to be informed before I'll drink anybody's koolaid. This forum has truly been helpful.

I'm trying hard to keep up with the more technical conversations here.... I've upgraded my machine, invested in the software, purchased a pulse oximeter and am only just beginning to get my mind around the data. I'm thankful to have a doctor that cares, a nice but not terribly valuable DME (bought my stuff online instead) but am completely invested in using these folks as Consultants - I would like to be able to educate myself to really take advantage of what's available that's actually worthwhile.

I would be grateful if anyone could share more information on how to interpret the data provided by these machines....

(I've found http://www.osahelp.com/#6 (excellent)... but would love more!)
My thanks in advance.
b*

I chose the first option.

I don't ordinarily meet other apneans, just my husband, and our discussions tend to be of the "your mask leaks" variety. My sister's husband also has CPAP, but doesn't use it much, last I heard. We three discuss the ins and outs of CPAP therapy at family gatherings, but somebody always interrupts. (I don't think they find us interesting.) I have an uncle with OSA, but he's been waiting for years to get officially diagnosed and treated. He isn't all that interested, but his wife sure is.

Interesting thread. I chose some do/some don't. I dont know that many people who use CPAP but I am personally disturbed by one of them. He is my best friend's husband and has been on CPAP for several years. I can remember when he got it and how fanatic he was about using it, frequently commenting on the fact that untreated apnea could kill you. This person does have some cardiac issues as well.

What scares me, personally, is that I have seen this person become almost competely non-compliant (well, not SEEN, but my friend tells me ) The mask is uncomfortable, it leaks, etc etc etc. I encouraged her to order a new mask liner for him, hoping it would help with comfort issues as I know he has not had (or wanted) any DME interaction for some time and yes, they DO call him. He still refuses, which is of course, ultimately his choice.

The reason this scares me is because I read so much about the problem of non-compliance with CPAP and I dont want that to happen to me. Just remembering how seriously this person took his treatment for some time and then...forget it, it doesnt matter, I dont like it anymore. I dont want that to happen to me and I am cognizant of the fact that it CAN unless I am vigilant. Example: I am a Type II diabetic. When I was diagnosed, I monitored my blood sugar faithfully and through weight loss and exercise, brought my disease under control very nicely. Now, I seldom test my blood sugar because I just don't think about it. Not good. I do have my AIC checked regularly, BUT really, this makes me no better than the person I am talking about with OSA.

I think it is just too easy to become "used to" something, tired of having to deal with it, etc etc etc. Right now I can't imagine sleeping without my machine. It is almost comforting to me. I am 6 months or so into treatment and I hope this forum will help me STAY vigilant. Now maybe I just need to find a forum that makes me take my blood sugar.


Jeanette

newhosehead wrote: Now maybe I just need to find a forum that makes me take my blood sugar.
Jeanette

Have you tried "BloodSugarTalk.com"?

All kidding aside, it is kind of interesting how we become complacent over time isn't it? I used to be much much more thorough about cleaning my machine. I still clean it, but not nearly as much. Do you have any idea how it happened with your friends husband? Was it a gradual thing? or did it happen abruptly?

blakepro wrote:

newhosehead wrote: Now maybe I just need to find a forum that makes me take my blood sugar.
Jeanette

Have you tried "BloodSugarTalk.com"?

All kidding aside, it is kind of interesting how we become complacent over time isn't it? I used to be much much more thorough about cleaning my machine. I still clean it, but not nearly as much. Do you have any idea how it happened with your friends husband? Was it a gradual thing? or did it happen abruptly?

blakepro, I will do a search for bloodsugartalk.com As for my friend's husband, it was a gradual thing, I believe. Just skip one night. Then skip two and so on and so on. I don't think he uses it at all now except when she throws a royal fit and that really isn't a great way to live.
But yes, the complacency thing...it is interesting and it is common, I think. And I do think staying plugged in to this forum is a good hedge against going there. Now you must excuse me while I go clean my machine.

Jeanette

I've found most folks don't know enough to talk very intelligently about their CPAP use. I just found out yesterday that 3 other people in my 16 person choir have sleep apnea! I enthusiastically yesterday asked one of them, "what machine do you have?" and he gave me a blank look. Hmm...his wife also told me that recently he woke up at 6 AM with a seizure after sleeping without the mask for three hours, and she sent him to the hospital. He was diagnosed after she noticed him stopping breathing multiple times at night. I believe that he's going to be using his mask more now, but no real interest in diving in to the dynamics of CPAP. You're right, spousal assistance is one way to get compliance!

Another choir member told me that his mask is quite old, and he hasn't been able to find his favorite mask for sale any more, so he's not very compliant. I gave him information about this website, perhaps we can all be of help. He's falling asleep in his car in between church services where he sings...hope he's able to find a good fitting mask and get back to using CPAP regularly to stay healthy. He has a beautiful voice.

My closest friends who use CPAP and have equal or more enthusiasm for information are you guys on this site, and I'm so grateful for you! I've learned tons here and plan to keep on learning from you. I agree, abrasiveness is hard to deal with when I'm sleep deprived, so kindness is key.

I would be grateful if anyone could share more information on how to interpret the data provided by these machines....

bwell, what a great link to osa information, thanks!! I plan to peruse it over the next few days that I have available. I find that it's helpful on this cpaptalk forum if I post specific questions, such as, "what does flow mean on the Rescan 3.10 software?" Also, if I do a search with specific words on this website, I've also found quite a bit about how the data can be interpreted. I'm learning right along with you!

Cheers, Happy Sleeper